Patient Work and Treatment Burden in Type 2 Diabetes: A Mixed-Methods Study

Abstract

Objective: To use quantitative and qualitative methods to characterize the work patients with type 2 diabetes mellitus (T2DM) enact and explore the interactions between illness, treatment, and life. Patients and Methods: In this mixed-methods, descriptive study, adult patients with T2DM seen at the outpatient diabetes clinic at Mayo Clinic in Rochester, Minnesota, from February 1, 2016, through March 31, 2017, were invited to participate. The study had 3 phases. In phase 1, the Patient Experience with Treatment and Self-management (PETS) scale was used to quantify treatment burden. In phase 2, a convenience sample of patients used a smartphone application to describe, in real time, time spent completing diabetes self-management tasks and to upload descriptive digital photographs. In phase 3, these data were explored in qualitative interviews that were analyed by 2 investigators using deductive analysis. Results: Of 162 participants recruited, 160 returned the survey (phase 1); of the 50 participants who used the smartphone application (phase 2), we interviewed 17 (phase 3). The areas in which patients reported highest treatment burden were difficulty with negotiating health services (eg, coordinating medical appointments), medical expenses, and mental/physical exhaustion with self-care. Participants reported that medical appointments required about 2.5 hours per day, and completing administrative tasks related to health care required about 45 minutes. Time spent on health behaviors varied widelydfrom 2 to 60 minutes in a given 3-hour period. Patients' experience of a task's burden did not always correlate with the time spent on that task. Conclusion:The most burdensome tasks to patients with T2DM included negotiating health care services, affording medications, and completing administrative tasks even though they were not the most timeconsuming activities. To be minimally disruptive, diabetes care should minimize the delegation of administrative tasks to patients.

Treatment burden and regimen fatigue among patients with HIV and diabetes attending clinics of Tikur Anbessa specialized hospital

“…Even with differences in disease context, knowledge and medication availability have massive impact for both diseases owing to their chronic nature. Moreover, this finding is consistent with previous qualitative studies 31 , 32 .…”

Treatment Burden and Regimen Fatigue Among Patients with HIV and Diabetes Attending ART and Diabetic Clinics of Tikur Anbessa Specialized Hospital: An Explanatory Sequential Mixed-Methods Study

“…This nding in agreement with Hassen et al,study (20) though the speci c disease context is different (DM/HIV vs Heart Failure). Moreover, this nding is consistent with previous qualitative studies (29,30).…”

Understanding the treatment burden of people with chronic conditions in Kenya: A cross-sectional analysis using the Patient Experience with Treatment and Self-Management (PETS) questionnaire

“…Empirical application of the PETS has so far only been documented for populations in the USA and Norway, and the reported treatment and self-management burden is consistent with our findings in so far as the highest burden among people with diabetes or multimorbidity was in the domains of medical expenses, monitoring health and physical or mental exhaustion from self-management [21,33]. PETS scores in US patient populations tended to be lower than in the Kenyan samples queried in this study, although in Eton et al's 2017 study, a subgroup of participants recruited from an urban safety-net hospital (Hennepin County Medical Center in Minneapolis, Minnesota), which provides care for low-income, uninsured, and vulnerable persons, had mean PETS scores that were much closer to those reported in our sample [21].…”